There are some developments about our family. Those who have followed us can leave a message in the comments when they want an update in the mail. This means family, good friends and dear blogger friends.

Sunday, June 23, 2013

Heart ultrasound and....


I went to the heart ultrasound without any expectations of good findings.
I knew by then there would be probably be a valve problem, perhaps even a contractibility problem.

It worried me a bit that I had to lay on my left side during the examination.
Up till then it had been a problem when I would be on my left side for longer than a few minutes.
The woman told me to signal that I had to sit up.

She started the examination by not allowing me to have a look at the monitor.
That bothered me a lot, as I want to know things at the same time as someone else does.
It´s my body...

But soon I realised she found a valve problem by the place she kept reviewing the anatomy and by the way she kept measuring what she saw.
I didn´t dare to move, nor ask to sit up.

Then she said there was no need to be frightened by the sounds which would follow.
Well, I welcomed them as I know the sounds of the heart very well.

All I heart was an enorumously leaking valve and a woosh that indicates a very weakened side of the heart.
It almost took my breath.
"Well, that´s a leaking valve for sure", I said.
She asked me to keep lying down even if it would be difficult.

Someone came in and left.

I was not allowed to sit up, and my breathing problems increased.

"I need to finish these measurements", she said.

Then I was allowed to sit up and I immediately looked at the screen.
All I saw was a very thin side of the heart and a valve that closed about half.

"Are you OK if I call your doctor in"?
Ofcourse I was.

He came, sat on the bed with me and looked at me.
I just looked back.
"You know?"
"Yes, I saw it and heard the enormous leakage."

"It's very bad. The valve is not closing at all, and the side is thin as paper. Your heart pmps 15% at most.
I want to admit you."

"Hmm... can I fo home and tell my autistic son and fetch my things.?"
"When will you be back?"
"Hmm...7 o'çlock?"
"no".
He smiled...I knew.
"OK, 6"
"No".
"Can't make it back at 5...so I'll stay."

"I've already arrabged a bed, so let's go there."

I was allowed to dress myself and walk to a bench.
It was about 5 steps away.
I could hardly get breath, but managed with all my energy to get there and sit down.
When I looked up he was standing near me looking at me.

One of my daughters walked in.
" I have to be admitted now. call the rest, please", was all I could say.

He was called and told the echopgraphist to bring me to the department as ony she knew what was the matter and could innform, others when something happened on our way there.
I didn't even protest when I was told to sit in the wheelchair.



More tomorrow.


Saturday, June 22, 2013

First visit to cardiologist


When finally the day arrived I could see a cardiologist I felt a bit better because the pneumonia had gone, but I was far too fast very tired. I had difficulty breathing and because of that was on the list for a CT scan of the lungs.

I arrived half an hour early for my appointment, but the assistant asked me in anyway.
She said there was no need to make an ECG, as the former one was just a little while ago.
I asked to do it again, as I was ill when it was made and I hoped it to be improved.

She said I needed the whole standard assessment, including length and weight, but I didn't mind as long as I got an ECG.

It turned out to be exactly the same as the former one, so I knew something was terribly wrong.

I had to wait for the cardiologist and expected to wait for half an hour, so took a paper from my bag and a pencil and started to draw.
I can't draw well, but sometimes I just try to get my mind away from worrying. So it seemed very appropriate at the moment.
No need to phantisize about what was going on when a cardiologist was on his way to explain to me.

Quite a while earlier than expected he stepped into the room.
He saw me drawing and smiled.
I smiled back and said that there was no need to study what was on the paper, because I can't draw at all. I just needed to kill time in a creative way.

It just clicked between us.
I don't know why.
Maybe because he looked very much like one of our chinese friends in Amsterdam.
Maybe my mala did the trick, as it does more often between like minded.

He gently told me that something was wrong with my heart and he wanted to do an advanced heart echo, followed by a 24 hours holter, which is an heart monitor one carries around as a very small box.
He didn't want to speculate, just go through the process step by step, if I could agree.
I could.
He told me I was not allowed to engage in any sports of intensive bodily movements. My heart rate was far too high, in the dangerous zone. I would place my life at risk.

He also asked if I could agree with him being my cardiologist.
I said that the challenge would ne on his part by having me as a patiënt.
We laughed and parted with a good feeling, even though I now knew for sure something serious was the matter.













Livin' on a Prayer



1) This song tells the tale of Tommy, who works on the docks, and Gina, who works in a diner. Where do you work?

After what has happened the past weeks I'm not alloweed to work at all.

2) Jon Bon Jovi has said that he and Frank Sinatra are distant relatives. Tell us about one of your relatives.

The famous Erasmus is part of our family tree.

3) Jon and his high school sweetheart tied the knot in Vegas at the Graceland Wedding Chapel, and they remain married today. When you were in school, who did you fantasize about marrying? Where is that person today?

I was engaged to be married, but he went to study at another part of the country, so we hardly saw each other.
We broke up.
He married with a woman with many musical qualities. he lived now in the north of the country. he took over the business of his brother after the wonderful guy sadly died far too young.

4) The Jon Bon Jovi Soul Foundation is devoted to supplying local food pantries and helping rebuild neighborhoods hit by natural disasters. Here's your opportunity to give a shameless plug to a charity you support.

I'm collecting money for an autism house annex caretaker's house.

5) Jon is often complimented on his hair. What's the most recent compliment you've received?

That O look so young the doc thought I had small children.

6) Everyone talks about their favorite vacation spots. But, since Sam is crazy, she wants to hear about a place you visited that you wish never to return to.

Can't be of help. Sorry.

7) When was the last time you played cards with an actual deck (as opposed to on your computer)? What game was it?

I hate playing cards, so I can't answer the question. But I was aksed to play cards just a week ago by an old man in hospital.

8) Do you bite your nails?

No. Inless one breaks and leaves a sharp edge.

9) Where are you as you answer these 9 questions? What's the view from where you sit?

In a corner between bookcases. On the shelf above the computer a small gnome is hanging, and a felt star. At the desk is a buddha statue, a prayer wheel and a few nice stones. And my glasses.


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Thursday, June 20, 2013

I'm back!!!


I'm back!!!

With a lot to tell and the hope I'm able to tell it all.


It started a while ago.

I wasn't feeling well, had problems breathing and felt I had to prepare my autistic son for living in a protected environment outside home.
The last is almost impossible after the whole caresystem has changed due to the recession, but the whole idea of having to take care of him untill my death frightnened me to bits. I assumed that would be untill my 80ties and I saw myself repeating every daily activity year after year in the same way, without any change than his beard getting grey and I growing a terrible curved back.
On the other hand I worried about him being left alone when i wouldn't be on this earth anymore.

I was tired of fighting all those people who know everything so well about the lives of others without being able to manage their own, and seeing even uglier fights in the near future.
Ofcourse I have my friends, but I felt alone for some strange reason.

Then I got pneumonia, which was rather nasty and more troubling then the 5 times I've had it before.
It was like something had taken my breath away and left me like a night candle, trying to stay on.. barely.

When the antibiotics were gone I still felt ill.
My doc send me to hospital for a bloodtest to see of there was still an infection.
The nurse said I would get his call in about an hour, but it took him all afternoon so I assumed he had to speak to the lungspecialist.
I was right.

She wanted to see me. I would get a mail the next day which would tell me when to call for an appointment.
It came the next morning, thursday, and stated the department would have the paperwork ready on monday after 14.00 o'clock so I could call after that.
Then the phone rang: I had to be there on monday.

She showed me the x-ray with the pneumonia and a lot more that was ugly, listened to my lungs and told me she thought I had a lung embolism.
I smiled. Told her I didn't have one, but that something else was seriously wrong and went on trying to breathe.

Then I got paperwork and was ordered to have bloods taken and to have an ECG.
I had to walk through a large part of the hospital, even had to go back because the secretary had mixed up names, and could hardly make it to the ECG.

To my surprise I got the transcript straight with me including a computerized diagnosis and it scared the hell out of me. I sat down, wrote it all down and handed the transcript over to the doc.

She told me I didn't have a lung embolism and was allowed to go home, but with a referral to the cardiologist.
It looked like something was wrong.

I had to wait 6 weeks before I got an appointment.
By then I had deteriorated badly, could hardly walk, had difficulty breathing every day for hours on end.



More tomorrow.














Tuesday, June 4, 2013

quick message

Laane is in the hospital with severe heart problems.
In case you want to mail her, just comment here and I'll send her the message or ask for my mail.

Her Daughter.

Monday, May 20, 2013

Proving she's healthy.

One of my daughters came home from school last week with all her emotions boiling out.
Before she'd even opened her coat she started to tell me what happened.

"First put that coat away and sit down", I told her.

So we sat down and she told me that her class-teacher had approached her in her rather irritating voice and had told her she was worried because my daughter is small, skinny and looks pale.
It sounds nice, and is probably meant well, but we've dealt with all sorts of people commenting on my daughter's looks and we're fed up with them.

My daughter is second of twins.
Many of the second twinchildren are smaller than their brother or sister. So is my daughter.

Funny thing is that she looked from the first moment on just like me. I used to have the same curly hair, the same eyes, and the same pale skin and I was just as skinny. The only difference between us is the fact that I was a bit larger and my character resembles more that of het twinsister.

When she went to kindergarten the teacher asked if she was healthy.
The teacher knew us well and knew that when I said "yes" it was OK.

When the girls went to primary school the teacher didn't know us. So we were told she looked bad and we needed to go to the schooldoctor with her.
We did, and told the woman to contact our family physician. He told her our daughter was perfectly healthy. Just small, pale and skinny.
My daughter got a clean bill of health and for a few months the teacher left her alone.
Then she started again. Did she eat enough? Did she sleep enough?

It became a chosen habit to visit our family physician every 6 months to show she was OK, so he could tell those teachers that. They believed him more than us, it seemed.

In the meantime our daughter grew rapidly...in het own sizebook.
She was able to eat more than her brothers.. LOL!
It was fun.
One of my friends couldn't believe it, so she invited my daughters over for dinner. Haha! She couldn't believe her eyes!!!

At school we were kind of dependent on the teachers. Some just accepted our daughetr for who she was, others judged us for not treating her well until they got to know us, saw the lunchbox of our daughter or called our daughter. One of them got stuck in her own judgements and made life hell for us. Oh, what people think.... and act on... me oh my!!

At secondary school we met about the same kind of couple of teachers. They didn't even bother to ask us something, they just judged... and hurt us badly.

But then we got a few good teachers who observed before they passed judgement. they saw how strong she was, how good tempered, how dynamic.
Funny thing is her ballet teachers never asked us about her health. None of them.

And the peers who dared to bully her about her skinniness were frightened off by her reaction. "Everybody is different."

By the time my daughter went to nursing school she had accepted herself. She didn't expect any bullying, and she certainly didn't expect teachers to put on their mothering voice and tell her she's not OK.

So I mailed that teacher.

Said that sure my daughter had some healthproblems during the flu epidemic that hit our city and ofcourse our family too.
But that she's OK.

Perhaps we need to inform our family physician that the old problem with well-meaning teachers has started again.

What would you do??











Poetry in music on a guitar

Music has always been of main importance in my life. Apart from ballet and later ofcourse my family.
Quite some people have created some wonderful memories with me.

One of those people popped up on TV a few weeks ago.
It was fun to see him. he was singing and sounded just like "in the old days."
I found him in the social media and commented on his singing and looks.
It was like he'd never changed, even though life sure hasn't been easy in the meantime.

Unlike me he never took his life in another direction. He sounded a bit ashamed. But I feel it's not up to me to comment on that. He wanted to explain and asked me to drop in.

I did.
It was like stepping back in time and into a world of the past.

One large wall in his livingroom was decorated with guitars.
A good gibson firebird caught my eye and made me smile.
"If you'd lived my life you'd never been able to have that one on the wall and use it to make music", I said.

Later he said that that remark made him feel at peace with the most important choice in his life: to dedicate everything to music.

Ofcourse he played his latest compositions for me.
Using such a gorgeous instrument adds a whole panorama of feelings to the music and text.
From rough rock to delicate melodies, it sounded all so much more... ripened.
He's one of the few people who can write poetry in music on a guitar.

We all live different lifes, and he thought mine would be more important because of the children.
Ofcourse we can give the new generation children. We have to.
But we also need to give them the arts, otherwise people won't get in touch with their inner self and their inner beauty.

We parted with the promiss to meet again when he's back in my country after a large world tour.
We'll be a bit older then, but still appreciating the best instruments and music.








Saturday, May 18, 2013

Greased Lightnin'



1) Greased Lightnin' was the name of a car. Have you ever given your car a name?

Never had a car for myself, so it sure didn't have a name.
How easy it is to think everyone has a car.....

2) Could your vehicle use a trip to the car wash this weekend?

They don't accept bicycles.

3) This song is from the soundtrack of the movie Grease, the biggest money-making movie musical of all time. Have you ever seen it?

Yes, I did.
several times, because when I had outgrown it, one of my kids took an interest.

4) John Travolta's astrological sign is Aquarius. What's yours?

The same.

5) In addition to being John Travolta's birthplace, Englewood, New Jersey, played a significant role in telecommunications history. In 1951, Englewood's mayor made the first-ever direct dial long-distance call in the United States. Now it's your turn. Tell us something about your birthplace.

My birthplace was a frontcity in WW2.
The bridge provided the only means to travel from north to south and vise versa.
The English together with people from the resistance crossed the river by boat and now at that very same place a new bridge is built.

6) Travolta is an excellent dancer. How are you on the dance floor?

Well, age is taking it's toll, but I was at least as good as he was.
Seems strange to say, but I was.

7) Grease is an upbeat musical about the students of Rydell High. Another Travolta movie is Carrie, which features the worst prom night imaginable. Grease or Carrie -- which is closer to your high school experience?

I've never seen Carrie, so I don't know.
I enjoyed high school. Not every aspect of it, but we were with a nice group of friends and we loved organising things at school. We did.

8) What was your best subject in high school? What was your worst?

Mathematics was my worst, some other subjects were far better.
Best: the languages.

9) Sam made good use of the bus ride to school, using that time to complete her homework. What do you remember about getting to or from school?

It was a long bicycle ride.
When my mom forbid me to wear denim, I got one from my gram. Half way I changed trousers at the home of a friend. So I always arrived at school looking up to date.



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Wednesday, May 15, 2013

CT-scan

Got a multiple-paged leaflet stating I had to wear a large sized t-shirt, so I went through all the moves of finding one.
The past months I've seen them all over the place, but last week I couldn't find one...anywhere.
But I fell for a very nice tunic, black with white city contours. Very nice fabric, perfect for the summer. Just leggings under it and ready.

Hb was not to keen to buy me a shirt for mother's day...that was the excuse for buying it, but a moderate expensive buy once a year should be possible. So I bought it anyway. Puh!

Then at home, the evening before the scan, I started to doubt my decision to wear it to the CT scan.
Plain nerves. Found me two old long-ish summer shirts and put those in the bag too.

Well, I arrived too early, was imemdiately referred to the scan department, was called in 4 minutes later.
She had a look at my ears and arms. "No jewelry". "Right, was in the leaflet."
"And do you wear a bra with iron?"
"No.. just an elastic top".

"Well, there's none to comment, so just walk in like you are and get it over with."

So I had to lay down, I just left my sjawl and mala behind, and was scanned.
Arms above me, breating in... in the circle, and out. Breating in...out of the circle...breating again.
Then she came in and told me she was also doing a round with breating out.
So she did.

And I could walk out of the hospital again.
Would have been nice to have all those scans, ultrasounds and other "few minute things" one after another.
It took me an hour to go to and fro, and about 5 minutes to be in.
On my way back I also got a good splash of rain.

But I've got my tunica...



Tuesday, May 14, 2013

The cardiologist - part 1

So yesterday I went to see the cardiologist.

I was far too early. Almost half an hour.
Even after registering and getting one of those hospital identification cards.
The lung department never requires one, but cardiology does.

I sat myself on one of the new coaches.
They look like old fashioned train seats, with high straight vertical backs. So very uncomfortable.
But I found one of the best magazines and settled for a long wait. Alone. The waitingroom was empty.

Within 5 minutes I was fetched.
The assistant looked at the former ECG and decided it wasn't necessary to make a new one. "It was made just 2 weeks ago."
I asked her to make a new one anyway, because I was so ill last time.

So I had to go through the full line of weighing, measuring and the ECG.

I hoped the ECG would be completely different from the former one, but it wasn't.
Quite a disappointment, but it also made me curious what would be the next step: ultrasound?

I had the wait for the cardiologist and was in doubt: should I go to the waitingroom and fetch that magazine, or take an empty paper from my bag and a pencil?
I could be in for a wait of half an hour.
I decided to go for the last and made a shopping list, which I never do, and then started drawing. Well, sketching.
You have to know I'm not a very artistic drawer...

The cardiologist suddenly entered the room and expressed his surprise to see me bussy drawing.
Immediately this set off a good conversation, with humor. It clicked.

He did his examinations and then told me not to sport or physical exercise in any other way, as my heartfrequency is far too high.
he said he thought it not to be caused by a heart problem. We've done all the tests necessary before, and nothing came up, so the mystery is referred back to the lungdoc.

He was pleased a CT scan has been planned already for wednesday.

Then we turned back to his field of expertise. He's going to search out why the computer signals ventricular hypertrophy by doing an echo.
I will also be called in to fit the whole machine toodoo for a holter-examination, which means measuring the heartactivity for 24 hours at home.

I liked his way of dealing with things. He was straightforward, not fond of guessing, and just a very nice guy.

I feel lucky to have two good specialists looking into my health.
None has done that properly before, not even the guys who were supposed to care for my diabetes.
It's great to have two people that are able to communicate well and I won't mind walking part of the more serious medical road with them. I can be myself.

So when I went home I was partly worried about what to expect, but was also smiling because he asked me how I managed with all those children when shopping as they won't fit in the car. I answered we don't have a car at the moment, but that it doesn't matter. They're between 26 and 17 and they're pretty well able to take their bicycle and follow me. he had a good laugh and said he forgot my age.
Well perhaps that's the problem why none took me serious before: too dynamic, not the complaining droopy old middle aged woman who needs care and attention.

.








Sunday, May 12, 2013

Mother's Day 2013


Another mother's day. I'm getting quite experienced, am I?

Today was a bit strange, as the oldest boys had other things to do.

One of them had to work, and one of them was invited for a helicopter flight with his father-in-law-to-be.

As we don't have much money at the moment I told them to turn back to macaroni chains and homemade cupcakes.
I got the cakes. LOL!

And a small present: a very nice container for in my bag with a small mirror.

We just had a nice day and that was OK for me.
But it was not without memories.

When the kids were young they had to learn a poem at school and present it at home.
They've never known that I was often the poem writer for mother's day. LOL!

My autistic son never liked mother's day very much.
He didn't like the DIY which school requested from him and he didn't like the fuzz at home.
He still has issues with that, because a break in routine doesn't make him happy.
But we never refrained from this special day.

I hope all mom's have a special day.


.


Saturday, May 11, 2013

Mama Told Me (Not to Come)



1) This song is about a lad who didn't take his mother's advice and attended the wild party anyway. When you were young, did your parents approve of your friends? If you're a parent yourself, how have you handled it when your kids start hanging around with friends you're not crazy about?

No, my parents didn't approve of them all. In fact it was my mother. But she objected against everything. The boy was too short, the boy had an uncle who.... She was afraid I couldn't assist her in the house anymore.

I have dealt with a friend of one of the girls I didn't like to get a more permanent place in het life. I asked him to come over and when she said "no", I asked her why. I just made her think without saying anything nasty.
Just to be able to see him from a different angle and to see her future behind tomorrow changed enough to make her tell him to come back when she would be still single at 30.

2) A 2010 poll named Marge Simpson of The Simpsons the most popular TV mom of all time. Who is your favorite TV (or movie) mother?

Mother Walton. LOL! She had a large family, could deal with all those changes of plans and people dropping in just like that. She never got angry with the kids, or I didn't see those parts, and she had a nice smile.
Last year I discovered Mamy on the BBC. I hope I wrote this right. She's my all time favorite. LOL!

3) Crazy Sam's mother is a big fan of The National Enquirer. As she likes to say, "They were right about John Edwards!" Do you read the tabloids? Cast a guilty glance at them when you're in line at the store? Or ignore them altogether?

I ignore them... or rather, they hardly pop up in my life, and the ones I saw in hospital in the waitingrooms were too old.

4) Mother Winters always gave Sam peppermint tea to calm her stomach. Do you have any tried-and-true home remedies to share?

Not really, tea will do.

5) Thinking of guts ... When making decisions, do you tend to consider all the options carefully or do you "go with your gut"?

Both, if possible. I try to consider the options, but if necessary I make an immediate decision and deal with the consequences.

6) Spring is here! Do you have a green thumb?

Yep, but need more green time.

7) Have you put away your winter clothes yet?

Right in the middle of it.
But oh, what did we have a long winter and how grey and terrible it is now.

8) After you lather and rinse, do you repeat?

Nooop

9) To celebrate Mother's Day, Sam is giving away Hershey bars. Would you prefer classic milk chocolate, dark chocolate or milk chocolate with almonds?

Good milk chocolate.



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I'm blogging for autism awareness and funds.
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